"Self diagnosis" trends...source of ridicule

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Shebakoby
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11 Oct 2009, 9:04 pm

MindBlind wrote:

To be honest, I've met a lot more people claiming that other people aren't autistic than people who are clearly faking it claiming that they have it. I think the real fad is people are pretending that they have the power to undiagnose people online for some reason. Even when that person decides to upload personal information about themselves like their medical records and such to prove the diagnosis, people still don't believe them. Yes, this happens- I've been on websites lwhere people would show their personal information and would still be called a fraud.

I mean, when people don't believe the person's f***ing medical records, those people afre simply hopeless.....

Also, this is why the US needs national health insurance because so many people have little access to services that they are entitled to because they can't afford the diagnosis. I think it's really sad because whether the person suspects a diagnosis of AS or not, they're trying to get a diagnosis, not because they are trying to be trendy but because they NEED it. They self diagnose (I suppose) because they know they have a mental disorder and they go to communities to get help. As a community, we must be supportive, even if we do doubt their claims. We don't know them, what they've had to go through and if they were or were not diagnosed. All that matters is that we do the right thing and help these people because they obviously need support. If it so happens that person did not have AS but some other condition, don't shame them- they needed your help at the time and they are still very much part of the community.

Actually, I live in a Country with National Health Insurance. People with AS are no better off here than they are in USA. In fact the resources for dealing with AS are pathetic here. I live in an area where there's literally nothing for adults, and very little to help kids. Government cutbacks certainly don't help. And there's lots they won't cover, so many parents with kids with AS find themselves out of pocket just as much as any American parents, if they can even find some kind of help.

zen_mistress
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11 Oct 2009, 9:19 pm

pschristmas wrote:

zen_mistress wrote:

Aimless wrote:

Your first post lest we forget:

Quote:

ShogunSalute
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PostPosted: Sat Sep 19, 2009 11:06 pm Post subject: new forum Reply with quote
hello, i'm new. but i have read alot of topics and posts here. i am wondering, is there a sub-forum, or could there be a sub-forum only for people who have been professionally diagnosed? it makes me feel sick on the inside to read posts by self-diagnosed people and people who treat this like a special club rather than a disorder. AS is glorified here alot. it's so pathetic. i just want to talk to people like myself. can there please be a forum just for people who actually have AS for sure? i hate this feeling of not knowing whether someone really has the disorder or just liked the idea of having it. no offence to anyone who is like this, i know you must just want to fit in somewhere.

Have any of the long discussions that have ensued altered your view?

ShogunSalute wrote:

I suppose I should confess, I did not write that post. (Edit: To clarify, it was written by a 16 year old, one of the people who bought this forum to my attention, this is actually his account that he made).

Isnt that like creating a sockpuppet account? People arent allowed to have more than one account or share accounts. It is silly to rail against people for not getting a diagnosis and then breaking rules yourself.

It's exactly like a sock-puppet account, Zen Mistress, and I'm glad someone else is as disturbed by it as I am. It seems very dishonest to me, even if this person has now confessed to what they're doing. We have no idea to whom we're speaking (or, in my case, who's posts I'm lurking and reading) and that bothers me a great deal. If they honestly want to do what they claim, they should sign up for their own account, not hide within someone else's.

Im glad Im not the only one who thought it was weird. (They)?) seem to only be on the board for the purpose of insulting others.

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zen_mistress
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11 Oct 2009, 9:21 pm

serenity wrote:

Ya know it seems strange to me that if you were to look at the threads with the highest post counts the quickest it's always the self-dx controversy. Every few wks one pops up. People with legitimate questions, and some in the haven with problems, and in need of support, go ignored, or barely noticed. Instead we choose to spend our energy here, making people feel unwelcome, and possibly scaring off new members. If I happened upon this site on a day where this thread (or any like it) was prominently displayed on the first page I'd not come back. I've encountered it on other AS sites, and I never, once went back.

And, no it wouldn't matter if I had an official dx. It's the attitude of bickering, and arrogance that irritates me. I try to spend my time around positive people, doing positive things. I choose not to give my energy to negative people that are trying to pick a fight by saying inflammatory things.

Good point. We would all be far better off staying away from stuff like this.

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flamingshorts
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11 Oct 2009, 9:22 pm

ShogunSalute wrote:

Hi,

I'm not answering any more questions, there are too many and all the answers can be found in previous posts of mine. But I don't think you guys read before you post anyways, just blindly flail and post.

Your logic is wrong here. The reason is that if you have two people using the same account it is not possible to tell what are your previous posts.

Dancyclancy
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11 Oct 2009, 9:27 pm

Well! Well! Well!......... Here we go again.......

I'm sick of this "I'm more important than you crap, and I'm legitimate and you're not carry on!

Yes! I am SELF diagnosed....... after 62 bloody years of being told I'm weird, being medicated as a child, seeing shrinks and psychologists at various stages over the course of my life...... and officially studying Psychology, also being on meds for anxiety and depression. I've been DX as PTSD, and GAD.
For most of my life there was no ASPERGERS as such and for that matter no AUTISM.

So a life time of my parents and myself trying to find out what was "wrong" with me I have self-diagnosed and found that I am in fact an Aspie.

Why am I so #%$%%@#$%^&** ??????

Well! This is why..... I also have had ME/CFS since 1999..... Yes! YUPPPY FLU, HA HA HA

Let me tell you that I've been told by others that ME/CFS doesn't exist, it is all a fake.......or "I don't believe in CFS". and treated as a malingerer.

GREAT FUN! I Don't think! Until very recently there has been no possible "positive testing procedure" that can identify ME/CFS. Most doctors treat people with ME/CFS with contempt and/ or disbelief due to their own lack of knowledge... the too hard basket.

Sound familiar!

NOW I find that, despite there being no avenues for adult diagnosis in the state in which I live, I'm discredited for self-diagnosing. DO I DO IT FOR FUN!! !! ! NO!

I'm sure that there will be some really compassionate souls out there who will say....
OH! You've jumped on another fad or whatever. I'm acutely aware of this.... and that is why I've told nobody except one sibling, my partner and one close friend.

BTW I don't think it is a coincidence that I also have ME/CFS........
Some research has shown a strong correlation between ME/CFS and ASD's in regard to viral illnesses.
When one is subject to multiple stressors the immune system is affected.... the other name for ME/CFS is actually Chronic Fatigue Immune Dysfunction Syndrome. CFIDS.
Why is it that I notice many threads dealing with... "cortisol " "Thyroid Function"," Extreme Tiredness", inability to live a normal pace of life. "sensory stressed", "sensory overload", and much, much more that is also common to CFIDS on the Forums on WP???

And no! The presence of these topics did not lead me to "assume" that I am Aspie.... it was the Questionnaires, and what the actual questions promoted ..... self awareness and seeing my life as NTs would have/do view it.
What you have been and are is normal for oneself.... therefore the fact that one realises at age 61-2 that eating lunch alone at school and at work is not considered "normal" and that mere "acquaintances" have been the people you have regarded as "friends" , being socially innappropriate in word and action.....
Stimming! And so much more that I'm amazed to find that there are others who are "weird" in similar ways to myself that I'm no longer abnormal in the unique sense but am a "normal aspie".
I'm aware that ShogunSalute will possibly regard me as "one wanting to fit in somewhere" and an "illegitimate Aspie".........

What is the source of this prejudice!! !???????

What is gained by trying to disenfranchise those self diagnosed, and create some sort of hierachy based on an "Official Stamp" of "Approval" versus the "uncertified invisible"???

As you do not accept my presence Shogun Salute you will understand, and no doubt be grateful, to hear that I will not intrude upon your space on the forums.

Last edited by Dancyclancy on 11 Oct 2009, 9:34 pm, edited 1 time in total.

CerebralDreamer
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11 Oct 2009, 9:29 pm

I don't have problems with the self-diagnosed, as long as the diagnosis fits. I know some people self-diagnose, and later on get diagnosed professionally with no problem, and I have no interest in bashing them. I'm more worried about the people who watch shows like Brainman, and then go off shouting they have AS, although quite frankly I haven't seen any of them.

Personally, given the nature of AS, those who fake disorders are likely to list a dozen other things before they get to AS, so I'm not all that worried about them. I just don't like the response of people when you tell them about a condition, going off on you as if you're self-diagnosed.

Of course, the whole bash against 'supposed' self-diagnosed Aspies is far more likely to happen on the net. Then again, you're more likely to get called every term on Urban Dictionary on the net while you're at it.

ShogunSalute
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11 Oct 2009, 9:33 pm

I don't think it really matters, none of you know who each other really are either. But that's ok, because what they're saying doesn't make you uncomfortable. I haven't been rude or offensive to anyone, I have been logical and calm and polite at all times. But the information I bring is not what wants to be heard, so I am 'bullied' into backing down. I find it pretty horrible that a support forum for ASD spectrum disorders requires people to meet very specific social standards, there seem to be clear (unwriteen) rules about what is allowed to be talked about and what isn't. My opinion on self-diagnosis is valid for good reasons, but I have been sought to be somewhat 'bought down' by people on a vendetta to protect themselves.

I am going to be blocking this website from all the computers here at my work, I will not risk any of the spectrum kids I know accessing this page and being bullied because they do not understand how to conform to your high standards. Many people on the spectrum are anti-self-diagnosis, but they are rejected here. Why? Because they don't like self-diagnosis and say so? Do they have to pretend they like what you like? Can they only say the things that make you feel comfortable? They are just as affected by issues as everyone else, yet because they can not conform, they are rejected/ This is just another typical NT playground where the kids who don't do and say the right thing are bullied into exclusion.

LostInSpace
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11 Oct 2009, 9:34 pm

outlier wrote:

And research studies are very stringent in their selection criteria; they routinely confirm the participants' diagnoses in the course of the study using the ADOS and other such instruments.

Agreed. I did my Master's paper on prosody in individuals with AS versus those with HFA, and the researchers in the articles I reviewed always confirmed the diagnoses themselves. I find it hard to believe that a legitimate researcher would just accept someone's word on it- at the very least they would be asked to furnish proof of diagnosis, and as I stated, generally researchers confirm the diagnosis themselves. Therefore, although it would be a pain to wade through a lot of volunteers who potentially wouldn't qualify, I don't understand how self-diagnosed people answering the "call "could possibly influence the study's outcome, unless the researchers were using very sketchy methods (in which case, there were probably other flaws as well).

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sinsboldly
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11 Oct 2009, 10:12 pm

ShogunSalute wrote:

Before you posted impersonating another person, did you think to read the WrongPlanet rules? Just as you deplore people that are not professionally diagnosed 'intruding' into groups we also have regulations about people posting on our website.

User accounts
--------------------
* Each user of WrongPlanet is only permitted to hold one user account unless given permission by the owner of WrongPlanet.net.
* Impersonating someone is not permitted.
-------------------

Ignoring the rules might suit your purposes, but it is not allowed on WrongPlanet.net.

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Angnix
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11 Oct 2009, 11:05 pm

Part of the problem is people self dxing is that there are other disorders out there. I was so convinced I was aspie cause I had obsessive interests, bad social skills, and meltdowns and some other people thought so, but according to the professionals I am not. I have other disorders.

I'm not saying that there are not some legit self-diagnosers, I'm just saying be careful with it.

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Blindspot149
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11 Oct 2009, 11:33 pm

ShogunSalute wrote:

But the information I bring is not what wants to be heard, so I am 'bullied' into backing down.

I am going to be blocking this website from all the computers here at my work, I will not risk any of the spectrum kids I know accessing this page and being bullied

I think wildgrape really hit the bullseye by asking about the source of Shogun's 'information'.

It certainly sounds like abandoned missile silo stuff.

An unnamed 'research' group, doing (and needing to do) ground breaking work that has been missed by everyone else.

When pressed to put up or shut up with some facts, empirical research results, even share some simple therapies that actually work the reaction is.......

The 'claim' to be blocking WP from ALL computers at 'work' (if he infact even has a job)

Do you get many people like this here :?:

Berating everyone and then running away with their ball when it gets down to clear logic :?:

Dancyclancy
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11 Oct 2009, 11:35 pm

Some of my teaching career I spent working with autistic children-adolescents.

ShogunSalute comments on most self diagnosed participants for his study were Aspergers and NO self diagnosed from other caterogry ASDs.

NO DISAGREEMENT! I would say that ALL of the Children_adolescents I worked with would be INCAPABLE of self diagnosis. What is more to the point none of them would have been eligible to participate in research..... due to requirements of the Board of Ethics.

A research participant must be 18+ yrs, if not it must be with signed informed permission of their adult parent/guardian), must volunteer with Full Awareness of the methods employed in the research and be deemed capable of making an informed decision to participate.

A High Percentage of non Asperger's ASDs would not fit the criteria required by any ethics committee.

ShogunSalute you have never actually given your research body credibility as you have failed to divulge the name of this organisation / research group.

There maybe people on WP who are diagnosed ( professionally) who may be interested in assisting in the said research if they knew who to contact .... to give their name for participation in further studies. :idea:

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12 Oct 2009, 12:53 am

serenity wrote:

If I happened upon this site on a day where this thread (or any like it) was prominently displayed on the first page I'd not come back. I've encountered it on other AS sites, and I never, once went back.

I would feel the same. The environment on this site for the self-diagnosed is toxic.

idiocratik
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12 Oct 2009, 1:03 am

Shebakoby wrote:

Everywhere you've got idiots that make fun of AS because it's the 'disease du jour' to be self-diagnosing yourself with. Because some people seem to have 'self-diagnosed', there are people that look down upon all that claim to have AS, because they think the claim is illegitimate.

Now myself, I was diagnosed when I wasn't even looking for the disorder. I had never even heard of AS prior to 2000. So it really fries my eggs that some moron will assume that I don't really have AS or that I 'self-diagnosed' when this was not the case.

Anybody else get people not taking their diagnoses seriously because some idiot assumed you self-diagnosed over the internet? Do those of you who self-diagnose wonder whether you'll ever be taken seriously if you cannot find a qualified professional to make sure?

I do know that a lack of qualified professionals in the field has resulted in a trend to self-diagnosis. And I do think that a real diagnosis by a professional is the best thing.

But seriously, what difference does it make if someone self-diagnoses with Aspergers?

I HAVE been clinically diagnosed, and people still don't take it seriously. I didn't even know what AS was until someone asked me if I had it. Then it was suggested by a friend of my mom's. So at that point I started researching it, and bought Tony Attwood's huge book. It practically described my life, so I decided that I seriously must have this "Assburgers" thing. Finally, I saw a psychotherapist and he agreed and gave me my Dx. In fact, he said he was surprised that I got it right; that many of the people who come to him say they think they have one thing and end up with something else. I just happened to self-diagnose myself properly.

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12 Oct 2009, 4:46 am

Shebakoby wrote:

Sorry, I really shouldn't have oversimplified the whole thing about health service. Even my own country has it's issues with healthcare and I didn't want to make it sound like this paradise.

Still, I think the problem has also got to do with the educational system not preparing itself for autistic pupils and also the government being idiots about how they spend their money. I think a lot of people here rely on charities to help them with their children (Like the national autistic society) but I'm not entirely sure. Sometimes, it's really expensive to get support from them, though. At the autism unit at my school, they raised money so that they could bring in someone from NAS to talk to the older kids about how to apply for a job and how to apply for university/college. Also, the unit I went to was often forgotten about and wasn't considered part of the school for a while.

Still, I don't deny that I'm extremely lucky because I actually got that support and lot of my friends didn't get diagnosed until they were in their teens and didn't get support until much later than that. So my country needs to clean up it's act.

But I still think our healthcare is quite good. Not amazing, just better than what most countries have.

rdos
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12 Oct 2009, 6:01 am

ShogunSalute, let's throw-in some reality into this discussion from somebody that has probably soon self-diagnosed about 100,000 individuals online. :wink:

First, your claims that there exist something called "AS" that only specialists can diagnose, and that this magical something is related to brain-dysfunctions. As I see it, it is your job to prove the point. Prove it, and publish it. Until then, I'll just call it fantasy.

Second, it is not because of self-diagnosis that AS (and ADHD) has such a bad name. It is because of BAD SCIENCE!!

The first thing one needs to do when putting together a new syndrome is to make sure that the parts one wants put together belong together. This is huge problem with both the AS and the ADHD-label. The things that are part of diagnostic criterias ARE NOT RELATED! A simple correlation study could easily confirm that special interests are not much related to social problems or problems with nonverbal communication.

Somebody in psychiatry thought it would be neat to move the borders to normal, and thus created the AS-diagnosis, not with the scientific method, but by simply putting together unrelated symptoms into something that sounded "good".

And by using diagnosis based on this unscientific diagnostic construction will not improve anything. People might just as well put self-diagnosed people in the studies as well, it won't matter. Bad science "in" will not give good science "out", it will just generate more bad science.

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